Newbie, confused, not diagnosed or anything

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Newbie, confused, not diagnosed or anything

Postby pinkcarys » Fri Jul 21, 2006 10:18 am


Hope you don't mind me posting? I'm 22 and already have endometriosis.

For several years I've wondered if I might have ME?CFS, the symptoms I have are simalar but not an exact fit, then I came across firbro on the net.

Reading through the symptoms has been rather strange because it is describing me. The only thing I'm not sure about is there is an overlap of symptoms with endometriosis (painful intercourse, painful periods, IBS like symptoms, bladder urgency) I have just had stage four endo removed but most of these symptoms are still there. I've got such a strong ache all over my body that I can't sleep, permanantly feel exhausted like I've been bitten by an energy vampire, and I read about the tender spots. I have most of them plus some that aren't on the description. Is this normal? Also, I have numbness down the back of my leg? Could this be fibro? I have to be careful here as I 've just had surgery on my ovaries which lie on the nerve in your legs.

I've had some pretty big ops in the past two years and feel that the symptoms I've described started after a particuarly big one, I never felt fully better form it, which s why I looked at ME.

Gees, sorry for the long ramble. I just need some suggestions. I haven't spoken to my dr's about FM but he has tested me a while ago for diabetes due to the tirdness.

WHat should I do, if anything? Is what I'm saying I've got typical? What would dr do if he thought I have?

Thanks if your still reading,
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Postby rach » Fri Jul 21, 2006 11:34 am

hi im new aswell.
i had to see a psychologist and everything before i wos diagnosed.
i read about fibromyalgia and recognised nearly all symptoms.
keep mentioning it to your doctor and make them look at print-outs.
it worked for me cos me and my mum refused to leave til he made us an appointment with a specialist and it turned out i wos right!

keep smilin :lol:

Postby netty39 » Fri Jul 21, 2006 4:44 pm

Hi Carys, I'm new too. Found the site last week. Try asking your gp to refer you to a rheumatologist. they're the best at diagnosing fms. I was referred to one cos they thought I had rheumatism, after he'd made me strip to my underwear (wasn't happy about that having had 5 kids!!), & made me do all sorts of strange movements I got a diagnosis. If your gp is reluctant be strong & insist cos drs are not all powerful, they do make mistakes. Hope this helps
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Postby lynnec » Fri Jul 21, 2006 5:12 pm

Hi Carys

I'm new too, having been diagnosed about two months ago.

I've had three major ops in the last 15 months and my Rheumatologist thinks this was the trigger. Interestingly the first op was to remove my remaining ovary (hysterectomy back in 1993 with one ovary removed) and during the surgery it was discovered that the ovary was embedded in my bladder wall which was in turn stuck to my bowel. Subsequently it took me ages to try and recover but I now realise that the Fibro had already set in. Six months ago two ops on my elbow resulted in a big flare up and collapse. Today I've got yet another bladder infection!

It's great to find people who understand here and I agree with Netty that a Rheumatologist is your best bet so get a referral. I was finally diagnosed by the trigger point tests and a brain scan to rule out MS. I was so relieved to finally find out what was wrong.
Lots of Love
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Postby Sal » Sat Jul 22, 2006 10:00 am

Hi Carys,

I found this site in March after 2 years of trecking to docs, loads of tests, being referred to a neurologist, cardiologist and finally visiting a chiropractic who, after 5 sessions, suggested I might have Fibro. When I read about the symptoms, was amazed at how closely they ressembled mine. I went back to my docs and he agreed this is what it could be, but he still didn't refer me to a rheumatologist. I didn't insist to see one as doc insinuated (sp) there was little point! I struggled on until last month when I just had to go back to docs as everything was just so awful (sheer exhaustion, pain, weakness etc.) I had blood tests for Lupus (which I've read closely resembles the symptoms of Fibro), hormones etc. etc, but all came back negative. At that point, my doc suggested a referral to a rheumie, but amazingly, still grudgingly as he said he had nothing really to go on to do so! Doc cannot of suggested it was urgent as I still don't have a date from the hospital yet - although I don't know where you are, but it takes a good 2 months in the UK to get an appt with these specialists. I'm sorry to harp on so long, but I guess the moral to the tale is that I wish I had asked for a referral when Fibro was first mentioned - I may have had a diagnosis by now instead of still being in the dark which is such a worrying thing isn't it - you imagine all sorts! I really appreciate it's difficult, but don't be a coward like me be too afraid to say that you'd like a referral.

Just wanted to say also, a symptom of Fibro is frequent trips to the bathroom. Also, I've always had very painful and heavy periods and symptoms are exacerbated (sp!) pre-menstrually. I've found, mid-cycle also.

Hope you get to the bottom of this very soon. Let us know how you get on won't you ...
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Postby Carolyn » Sat Jul 22, 2006 4:45 pm

Hi Carys,

Totally agree with all the other replies, do ask your GP for a referal to a Rhumie. It was interesting to read what Sal also said about symptoms being exacerbated pre menstrually and also mid - cycle it's just what happens to me!

Anyway good luck with seeing your GP and let us know how you get on.

Gentle Hugs

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Postby BuffyBoo » Mon Jul 24, 2006 4:41 pm

Hi, I agree totally,
A rheumatologist is the only guy that anyone (DWP) will take seriously, if you haven't seen one they just don't seem to believe us. The rhemie may not change anything but they can get you access to physio, which really will help you.
I appreciate that you are sore from the surgery...did they remove chocolate cysts or were you really "gummed up " with patches? Either way it's a lot of healing to do and we don't heal as quickly, can I suggest you add Zinc into your diet or take a supplement, it helps with tissue regeneration so may help the healing process. Check with your Gp or Pharmacist first tho.
I hope you feel better soon.
Be happy
Buffy x
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Postby hippychick » Thu Jul 27, 2006 8:37 am

Just like Sal, I too was tested for Lupus but was only told that they'd found some antibodies in my tests, but not enough to worry about :!: Now being an ex-nurse, just being told I had 'antibodies' wasn't enough information for me. I wanted to know how many and the names of each one. Wanted to be properly introduced to these 'antibodies' :lol:

Never got any further than that though and just knew that they were watching these 'antibodies' to make sure they didn't increase :!:

Suppose at the end of the day, if you've got a choice between FMS and Lupus....FMS is the best one to get coz at least that's not supposed to be 'life threatening' :?: :?: :?: Unless of course, you get to the Hari Kari stage, then methinks that suicide might just be considered life threatening :twisted:

Like Buffy says, Zinc is a great thing to take extra of too :!: I've been on it for a few years as it just so happened to be in the same tablet from the health food shop along with the Calcium and Magnesium that I was taking first of all for my muscle cramps, (the magnesium). But the advisor in the shop recommended the chelated Calcium, Magnesium and Zinc combined and I thank her for that. Have hardly had so much as a common cold, (famous last words :roll: ) since starting on it. Even when my husband has a cold, I have so far for about three years, managed to avoid catching them from him. I also eat lots of broccoli and I'm sure that helps too. If you can't face eating the stuff just as it is, you could make it into a soup and you're still getting the goodness from it but it might be a bit more palatable. We virtually live on homemade soups in this house :P

Gentle huggles,
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